Bereavement support is an integral part of palliative care.
Grieving after loss is a normal process; however, some grief reactions become complicated and may seriously compromise the health of an individual.
Routine bereavement care helps identify people at risk of complicated grieving.
The burden of grief can last for years, sometimes indefinitely.
People caring for the bereaved need to pay special attention to cultural differences, the burden of caring for dying children, and the special support needs of bereaved children and adolescents.
Excellent resources to assist in grief management, including the expertise of palliative care teams, are readily available.
Palliative care philosophy has emphasised support for the bereaved as no less important than its other contributions to healthcare in pain and symptom management, home care and family support.1 Most palliative care teams allocate specific resources to bereavement risk assessment, early intervention, and continued monitoring of individuals exposed to loss of loved ones through terminal illness. Their work has been underpinned by major research efforts in a number of centres, such as the Centre for Palliative Care at the University of Melbourne.2-4 Palliative Care Australia has established the maintenance of a bereavement service as a core component of comprehensive palliative care.5
Grieving is a normal response to loss, and not everyone needs expert intervention to help manage grief. Assessment by palliative care services can help determine who needs assistance and recommend appropriate responses. If considered appropriate, intervention should begin at the time of referral and continue through terminal care into the time after death. That means a focused and structured program within the day-to-day work of the palliative care team, calling for resources that have not always been easy to access or maintain.4
Practical advice is commonly sought by family and friends, but also by staff who have supported patients through stages of discomfort, fear and regret. There are no quick and easy answers, no recipes for every situation of loss and grief. Nevertheless, many useful texts are available,6-9 and recent reviews by Parkes10 and Sheldon11 are succinct and helpful.
Worden6 suggests that a bereaved person needs to accomplish four basic tasks:
Accept the reality of the loss;
Experience the pain of grief;
Adjust to an environment from which the deceased is missing; and
Reinvest energy in other possibilities.
What does one say? What makes a difference? Which interventions help? A simple question, “How are you — in yourself”, may be sufficient to start things off; other questions might be “What do you miss most?”; then perhaps later, “What don’t you miss?”, gently encouraging the bereaved person to think about a life without the deceased. It may be a year, or many years, before a bereaved person begins to experience a recovery of meaning and purpose in life.
One of the most effective ways of managing a bereaved person is to offer a safe and caring setting in which to express grief, facilitated by someone who is not too close to the bereaved or the deceased person, and so not seen as required to share the burden personally.6 Such a setting is provided by a bereavement group, whose members have all experienced loss and who meet with a trained facilitator to share their experiences and feelings. Members of the group find support in these encounters through mutual understanding.12
Maintaining contact with the bereaved person is also important, whether it be in the form of a friendly telephone call from a volunteer (alert to discern unmet need) or more skilled counsel from a social worker or trained bereavement worker.13 Regular anniversary remembrances (such as a card or phone call) from the team are considered helpful by many, gently breaking in on the difficulty of loneliness. The opportunity to attend a memorial service, some months after the death has occurred, offers a focus to the hoped-for healing process.
It is important to recognise that, along with the sadness, anger, bewilderment and anxiety that can accompany loss, natural healing processes are often also at work to facilitate adjustment and adaptation. Separation from people and environments important to an individual occur repeatedly throughout life. The ensuing sequence of events often entails disbelief or denial, followed by intense physical reactions of weeping and yearning. This may be succeeded by a time of extreme loneliness and disturbed thought, with repeated replaying of the sad events. Only after a longer period will a sense of reintegration and readjustment allow the bereaved person to take up life again with confidence. But there is no set or certain sequence to follow, and emotions may fluctuate wildly, sometimes flaring up with an intensity of emotional pain after a period that promised a settled adjustment.
The grieving process may be complicated for certain vulnerable individuals or for any person faced with especially stressful circumstances of loss. People who have suffered earlier separations or losses for which adjustment proved difficult, people with existing psychiatric disorders, or people coping with family dysfunction or uncertainty in their close relationships will often experience greater difficulty. The loss of close relatives or friends (eg, a spouse or one’s own child), a sudden traumatic death or suicide, or death by murder or from a disease difficult to talk about (eg, AIDS) can also complicate grieving.14,15 These situations may increase the risk of intense and prolonged mourning, depressive or anxiety disorders and poor physical health. Skilled assistance is often needed to help people in these situations progress beyond their grief.
Major cultural factors also influence how grief is expressed and managed. People from some cultures express their grief loudly and publicly, while others become silent and withdrawn. It is important to respect “cultural safety” and meet with families and individuals on their own cultural terms.16 Particular importance is attached also to grief affecting adolescents and children, which requires a sensitive recognition of their special needs.17,18
Many palliative care workers who are experienced in bereavement care are concerned at the lack of bereavement support available in major healthcare institutions such as teaching hospitals. In such environments, sudden death, traumatic death and death in unfamiliar and isolated circumstances make more likely the risk of complicated grief for those left behind. Partly as a result of the example of palliative care, this deficiency is being increasingly addressed.19
Many resources are available to guide a better understanding of the grief process and the steps can be taken to lighten its burden, whether by a friend, healthcare worker or counsellor. Palliative care services may refer people to organisations such as Solace (for the widowed) or Compassionate Friends (for parents and siblings). The Centre for Grief Education at Monash University publishes a comprehensive list of relevant books on its website (www.grief.org.au/library_cat.html).
- 1. Parkes CM. Bereavement. In: Doyle D, Hanks GWC, MacDonald N, editors. Oxford textbook of palliative medicine. Oxford: Oxford University Press, 1993: 665-678.
- 2. Kissane DW, Bloch S, McKenzie M, et al. Family grief therapy: a preliminary account of a new model to promote healthy family functioning during palliative care and bereavement. Psychooncology 1998; 7: 14-25.
- 3. Kissane DW, Bloch S, McKenzie DP. Family coping and bereavement outcome. Palliat Med 1997; 11: 191-201.
- 4. Aranda S, Milne D. Guidelines for the assessment of complicated bereavement risk in family members of people receiving palliative care. Melbourne: Centre for Palliative Care, 2000.
- 5. Palliative Care Australia. Standards for palliative care provision. 3rd ed. Canberra: PCA, 1999.
- 6. Worden J. Grief counselling and grief therapy. London: Tavistock, 1991.
- 7. Buckman R. I don’t know what to say. London: Macmillan, 1988.
- 8. McKissock M, McKissock D. Coping with grief. Sydney: ABC Books, 1985.
- 9. Raphael B. Anatomy of bereavment. London: Hutchinson and Co Ltd, 1984.
- 10. Parkes CM. Coping with loss: facing loss. BMJ 1998; 316: 1521-1524.
- 11. Sheldon F. ABC of palliative care. Bereavement. BMJ 1998; 316: 456-458.
- 12. McKissock D, McKissock M, Williams P. Bereavement support groups: a handbook for groups leaders. Sydney: Bereavement Care Centre, 1994.
- 13. Parkes CM. Bereavement counselling: does it work? BMJ 1980; 281: 3-10.
- 14. Raphael B, Minkov C. Abnormal grief. Psychiatry 1999; 12: 99-102.
- 15. Walshe C. Whom to help? An exploration of the assessment of grief. Int J Palliat Nurs 1997; 3: 132-137.
- 16. Prior D. Palliative care in marginalised communities. Prog Palliat Care 1999; 7: 109-115.
- 17. Henshelwood K. The effect of sudden sibling loss on the adolescent or young adult. Int J Palliat Nurs 1997; 3: 340-344.
- 18. Stokes J, Pennington J, Monroe B, et al. Developing services for bereaved children: a discussion of the theoretical and practical issues involved. Mortality 1999; 4: 291-307.
- 19. Williams AG, O’Brien DL, Lawton KJ, Jelinek GA. Improving services to bereaved relatives in the emergency department: making healthcare more human. Med J Aust 2000; 173: 480-483. <eMJA full text>
Publication of your online response is subject to the Medical Journal of Australia's editorial discretion. You will be notified by email within five working days should your response be accepted.